On July 5th, China convened the first meeting of the Red Ribbon Forum,
a gathering of government officials, NGOs and experts to discuss AIDS and human
rights concerns. Mark Heywood, the chair of the UNAIDS Theme Group on HIV/AIDS
and Human Rights, delivered a speech calling for more space for civil society. During
an intense – and in China, unprecedented – discussion period, civil society
representatives raised frank concerns about a range of human rights issues,
including ongoing restrictions on civil society, and demands for compensation
for the blood scandal that transmitted HIV to thousands of villagers. The full
text of Heywood’s speech follows.
The critical importance of engagement with civil society in national responses to HIV
Address by Mark Heywood
Inaugural Meeting of the China Red
Ribbon Beijing Forum,
Xiaoxiang Hotel, Beijing, 5th
July 2010
I would like to start my presentation
this morning by thanking you for inviting me to this historic occasion, and
congratulating you on the bold decision to set up the Red Ribbon Forum. This is
a great step forward, but obviously it will be measured and evaluated not only
by what you achieve today, but what you achieve over the coming years as a
result of this Forum.
I feel fortunate and privileged to be
here today. This is my fourth visit to China, and on each occasion I have seen
some progress in the recognition and capacity of civil society and in openness
from Government to working with civil society. This is not to say that there
are not challenges and problems.
I believe that I have been asked to
address you on ‘The importance of engagement with civil society’ because I am a
civil society leader from another developing country, South Africa. SA is also
a growing political and economic partner of China, so it makes sense that we
should also be social partners. I am therefore happy to share with you my views
and experience.
I am the Deputy Chairperson of the SA
National AIDS Council (SANAC), which is a national forum between 18 civil
society sectors and 8 government ministries, whose task is to advise the South African
government on HIV/AIDS policy. It embodies the principle of civil society engagement.
The chairperson is the Deputy President of our country, Mr Kgalema Motlanthe. I
am also the director of an NGO on law and human rights, SECTION27, as well as
an executive member of the Treatment Action Campaign (TAC), a social movement
of people with HIV and AIDS.
At times in the last decade, I have
been a fierce critic of our government – we have taken it to court, demonstrated,
been arrested – but ultimately, we achieved meaningful engagement and important
results in the fight against HIV. We are also our government’s strongest
supporter when it does the right thing. This is the first point I want to make:
civil society is independent from government, but it is not anti-government.
“Criticism” is not necessarily “opposition”.
I hope to convince the government
representatives here today that civil society is a critical component to an
effective response to HIV. More than this, I want to persuade you not just to
pay lip-service to this principle, but also to put it into practice – however
challenging this may be in your culture and political environment. But I also
want to do this in the context of today’s discussion, which centres on human
rights and HIV/AIDS, with the hope that this discussion will contribute to the
meeting the objectives of the China Human Rights Action Plan (HRAP) on health.
This Forum seems fully in keeping with the commitment of the HRAP which reads:
“Democratic and scientific
decision-making will be promoted to expand public participation in the decision
making process. In principle, public opinions will be solicited when laws, regulations
or public policies which are closely related to the interests of the people are
formulated. Institution building will be promoted for holding public hearings
on the legislation of important laws and regulations, soliciting public opinion
for the formulation of major policies and measures, and holding expert
consultation or third party verification when making decisions over major
issues.”
From the above quotation it is clear
that the State Council has recognised that civil society is required for
effective governance and accountability in the response to AIDS.
Why work with civil society?
HIV is clearly a major threat to
individual and public health, and the type of major policy question anticipated
by the State Council. But why is it one that requires civil society engagement?
To answer this question I think we must ask ‘what does HIV/AIDS represent to
our society?’ The world is full of viruses, and generally it a rule that it is
the poor and weak who suffer the most from preventable disease. However, HIV,
more than other virus, exposes and exploits our weaknesses, because the people
most vulnerable to HIV are people who are socially disempowered for man-made
reasons: because their behavior is outlawed or stigmatized, or because they are
socially or geographically marginalized, or (in some parts of the world)
because they are women. Once someone is actually living with HIV, they then
experience terrible stigma just because of their health status and the fear and
ignorance that surround it.
HIV is like a lithograph that
highlights all the fault lines in our society. Some people might think this is deserved
punishment for people who deviate from social norms, that the fact that HIV
affects the marginalized is all right because that means it does not affect
‘us’. But this argument is unacceptable for two reasons.
Firstly and most importantly, as
Justice Michael Kirby has already explained, we live in a world that is committed
to equality, non-discrimination and the equal dignity and worth of all people,
principles we protect through human rights.
Secondly, the argument is flawed
because if HIV is unchecked in some people it can end up posing a risk to all
people. This is what happened in South Africa: HIV began in the most vulnerable
populations (sex workers, migrant workers, men who have sex with men), but
ended up as a virus that circulates widely within the general population (HIV
prevalence in the population has reached nearly 11%). It is true that there are
aggravating factors in SA that assisted this to happen and that it is unlikely
to happen on the same scale in China, but the principle still stands, and even
now the epidemiology of HIV in China is showing an evolution of the
characteristics of the HIV epidemic. It is in this way that we see how
individual rights and people’s rights are connected: to protect the people
you must protect the person.
To prevent this China’s 2006 Regulations
on AIDS Prevention and Treatment recognize that it is essential to reach the currently at risk
populations with information, education, condoms, as well as medical treatment and care when necessary.
However, Government cannot reach these at risk populations alone because:
·
Government has outlawed or marginalised these people, people are scared of government and do
not trust it, and some government officials feel, that if they provide direct
services to outlawed people they are also doing something illegal (this does
not apply to all in government, but it also points to why government HIV/AIDS
education is important).
·
There is a point in every society, even China, where government stops and people take
over the running of their own lives. It is hard for government to penetrate
beyond this line.
·
Many people at risk of HIV and many people already living with HIV are in hiding as
a result of the severe social stigma that still exists linked to HIV infection
in China — for example, men who have sex with men.
However, whilst government may face
barriers, there are organizations who work with those most affected by HIV.
These organizations, what we loosely call ‘civil society’, are either formed by
members of these populations themselves
(set up for a variety of reasons, sometimes for advocacy, sometimes for
information, sometimes to provide care and support), or are organizations –
based on human rights principles – that work to advance the interests of groups
that are unable to speak for themselves. Fortunately, if you look around this
room, some of these groups are represented here.
Another advantage of civil society is
that it is able to see things that government cannot. The controversy in November 2009 in Fuyang is an
example of this. It was civil society organizations that first complained about
discriminating language against MSM. But this was quickly resolved by both the
local and national CDC. When NCAIDS spends money on HIV interventions, then it
is in the interest of both the government and the people that this money is
spent efficiently, effectively and in accordance with existing policy. If not,
why spend it in the first place? It is in the nature of government officials to
report positively about the delivery of services. Few government officials will
say “we are delivering bad services”!
The recipients of these services are in a much better position to
honestly report on the quality of the services.
Civil society can therefore be very
important for ensuring accountability of government officials and their programs.
Therefore, in my view, any country
that aims to tackle HIV/AIDS effectively requires a compact between civil
society and the government.
What does working with civil society mean and require?
Let me speak briefly from my own
experience, although the traditions of civil society in South Africa are
different from the traditions in China.
In my country civil society played an
important part in the liberation struggle from white minority rule. As a
result, civil society was very influential in the adoption of a constitution
that explicitly recognizes that civil society has a role in government and that
government must be continually accountable to civil society. As in China, the
Constitution is our supreme law, but our constitution goes further by giving
people express rights.
Nonetheless, there are similarities
between us. We are both developing economies. We are both trying to find ways
to express our countries’ rights and needs against the old powers. We are both committed
to socio-economic rights and to raising the living standards of the millions of
poor people in our countries. We face
similar legal, environmental, social and health challenges.
Five challenges
One of the recommendation of the 2009
WHO/UNAIDS Universal Access Mission to China is that civil society
participation in joint assessment and UN General Assembly Special Session on
AIDS (UNGASS) reviews be strengthened. I believe the Chinese government has
accepted these recommendations. But what will this actually require?
In the concluding section of this
address, I raise five points that I believe are necessary if the China Red
Ribbon Beijing Forum is to result in an effective collaboration (compact)
between civil society and government on HIV/AIDS. I realize that some of these
points might be considered sensitive, but I raise them for constructive reasons
and with respect for the Government of China:
1. Space for civil society to operate legally and without interference
For civil society to be effective, it
requires legal recognition that is granted easily and simply for its activities.
In South Africa, my organization is registered under the Companies Act as a
non-profit organization and under the Social Development Act as a public
benefit organization. We are required to comply with ordinary laws, to publish
annual financial statements, and to have proper systems for governance. Other
than this, we attract no attention from the government.
We conduct extensive human rights
education and advocacy amongst the poorest and most vulnerable, but are able to
do so without censorship or threat of closure.
Although we are meeting amicably
today, I continue to hear reports of the problems some civil society organizations
face in China with registration and allegations of harassment in their
activities. Organizations that work on human rights like Aizhixing, Dongjen and
Yirenping are an asset to China. Individuals like Wan Yanhai, Li Xige, Tian Xi,
Zhu Longwei and others are vital for accountability and effectiveness in the
AIDS response.
If harassment continues, it will make
it difficult to build trust and an effective partnership. Some have already
said that this Forum is a sham. It is not sufficient for us to say that
they are wrong, I think we should prove them wrong. I would appeal to
the government in Beijing and the Provinces to continue with positive steps
that are being taken to make it easier for BGOs to register and for the Ministry
of Health to facilitate NGO registration, funding and scope for operation.
2. Space for civil society to engage with
government at all levels (national, provincial, county)
It is a step forward that today you
are starting an engagement between government and civil society at a national
level. However, when it comes to human rights, often the worst violations take
place at a local level by local officials. Further, although we may talk a lot
about HIV at a national level, the implementation of HIV programs takes place
at a local level. Therefore it is essential that forums are also created at a
local level for discussions on human rights and for measures to be agreed that protect
the human rights of vulnerable populations.
3. Training within government structures and the
health system about the role of civil society & coordination and
consistency between government departments
This point relates to the one above.
It is not possible to create spaces for dialogue, partnership and action, if
government officials resent or are suspicious of civil society. To overcome
this requires engagement with and training of officials at lowers levels of
government, particularly the police and health care workers.
This challenge is not unique to China.
In SA we have very good national structures and almost nothing at a local
level. Very often health care workers stigmatize people with HIV. Police harassment
of sex workers, who are also illegal in SA, adds to their vulnerability.
4. Willingness by government to act on civil
society’s reports and recommendations where warranted
Engagement with civil society should
not mean forming “talking shops” to act as pressure valves to let off steam.
Recommendations should be seen to be considered by Government and actually
result in positive changes. For example, this year the China Male Tongzhi
Health forum, in their contribution to the China 2010 UNGASS report, have
called for “more appropriate laws to ease HIV prevention work, better support
mechanisms for grass roots organizations, and development of mechanisms for
reporting human rights issues.” How will these and other recommendations be responded
to by Government?
5. Funding to support independent civil society
Civil society cannot play its role
without funding, as not-for-profit organizations can rarely generate their own
funds. This makes them dependent on government, foreign donors and the Global
Fund.
Almost all NGOs in China express
concern about funding. For example, I am aware of the concern of a range of
NGOs that the proportion of funding for NGOs from the Rolling Continuation
Chanel (RCC) is too low, and that the Country Coordinating Mechanism (CCM)
People Living with HIV (PLHATM) and NGO
working committees have assessed that only 12% of the RCC program budget is for
NGOs. This is self-defeating for the RCC and needs to be changed. But I would
argue that the Chinese government itself needs to fund, invest in and assist
the sustainability of civil society. This is both an HIV prevention and
treatment strategy.
I look forward to discussing with
members of the Forum and the Interim Steering Committee how to make this Forum
– a very significant initiative – into a process where Government and civil
society are able to tackle and resolve many of the obstacles that are blocking
an effective response to HIV in China.
Thank you.
Mark Heywood is Chair of the UNAIDS Theme Group on HIV/AIDS and Human Rights, Deputy Chairperson of the South Africa National AIDS Council, director of Section 27 (www.section27.org.za), and an executive member of the Treatment Action Campaign (www.tac.org.za).
